Post on 28-Nov-2014
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the power of
social in health & healthcare
Exploring Digital Health Trends Report #1: The Power of Social
At Microsoft Innovation Center Vlaanderen we are convinced that healthcare is at the
cusp of radical change, driven by a number of converging technologies and digital
trends, such as sensors, mobile technologies, Big Data & analytics, gaming
technology, online education and social networks.
In a series of reports we explore key digital health trends and related opportunities
for technology companies, healthcare providers and patients-consumers. We take
both an international and Flemish perspective, the latter based on interviews with
local stakeholders. In this report we focus on social networks.
Author: Frank Boermeester
About Microsoft Innovation Center Vlaanderen
Our mission is to stimulate ICT-related innovation and
entrepreneurship in Flanders, with a particular focus on healthcare.
We do so by supporting high-potential technology startups. MIC
Vlaanderen has two operational offices in the cities of Genk and
Kortrijk, Belgium.
www.micvlaanderen.be
Why does social
matter?
How are providers
responding?
Startup Mechanics I
Connecting Patients
Startup Mechanics II
Connecting Patients
and Caregivers
Startup Mechanics III
Connecting
Caregivers
Obstacles & Barriers
A Word of Advice
AGENDA
First, what is “Social”?
The social “platforms”, obviously
social defined
Also, the thousands of niche social tools
social defined
In fact, any application
(public or
organisational) can
have ‘social’ features
social defined
1. Social = Social Networks,
Social Media, ‘social’
features of any application
2. User generated content
3. Community
4. Collaborative endeavour &
crowdsourcing
5. Decentralised reach &
distribution
Why does social
matter?
Note the generational shift
of young people (aged 18-
24) in the U.S. would engage
in health activities or trust
information found via social
media. This while less than
half of people aged 45-64
would share via social
media.
%
PwC survey of US consumers. PwC Health Research Institute, “Social media ‘likes’ healthcare”. April 2012
have joined a health forum or community
PwC survey of US consumers. PwC Health Research Institute, “Social media ‘likes’ healthcare”. April 2012
42%
25%
20%
It’s happening faster than you think
have posted about their health experiences
of U.S. consumers have used social media to
access health-related consumer reviews
“Clouds”, a song
Zach Sobiech
released on YouTube
about his battle with
cancer, went viral
and has achieved
close to 10 million
views.
Patients are inspiring millions
Cancer survivor Dave deBronkart and other
activist “e-patients” are reaching global
audiences and helping to transform the
healthcare system, especially with regard to
patient empowerment and the accessibility of
healthcare information to patients.
Patients are sparking a revolution
How are providers &
pharma responding?
They’re opening up
The pioneer & benchmark: The Mayo Clinic began using
social media in 2005. Ranked as most social media
friendly hospital in the US.
PROVIDER CASE Social Media Strategy at Providers
www.mayoclinic.org
US-based leader in medical care, research & education
Sharing Mayo Clinic = blog &
social network where patients
share stories
490,000 Facebook fans &
690,000 Twitter followers
15,000 YouTube subscribers, 11
million views
Regular podcasts and Q&A
sessions with Mayo doctors
“More than 3,300 physicians, scientists and researchers from Mayo
Clinic share their expertise to empower you.”
PROVIDER CASE Social Media Strategy at Providers
www.memorialhermann.org
Houston-based hospital
In Feb, 2013, the hospital life-
tweeted a caesarean section,
from prep to aftermath, sharing
video (GoPro camera), photos,
information and responding to
questions via Twitter.
83,000 people watched live, and
millions saw stories online, on TV
and print.
2000 comments sent to the Dr.
Live tweeted caesarean section (#MHBaby)
• It’s where patients are
• Facebook, Twitter, YouTube, etc are free to use
• Hospitals can prepare patients for their stay using accessible videos, and thus create a better experience
• Providers can offer a trusted place for patients to share their stories, creating word-of-mouth recommendations
• It enables rapid dissemination of news about specific diseases and treatments, keeping patients informed and attracting new ones
Lee A.
Aase,
Director
Center for
Social
Media,
Mayo
Clinic
Source: Bringing the Social Media Revolution to Health Care.
Mayo Clinic SlideShare, Nov 16, 2012
Why are providers using
social media?
“Applying social media in
healthcare isn’t just
inevitable: it’s the right
thing to do in the interests
of patients”
Social media & Flemish
hospitals? …missed opportunity!
10%
51%
39%
0% 10% 20% 30% 40% 50% 60%
Integrating social media in organisation
Taking first steps next year
No social media activities
Source: Zorgnet Vlaanderen Survey 2012
PROVIDER CASE Social Media Strategy at Providers
www.zol.be
Hospital that is pioneering social media use in Flanders
Lighter ‘infotainment’
channel, 4000 likes. Goal: 20-
30,000 users.
Mix of press videos, ‘how to’
videos for healthcare
professionals and
information for patients
Used mainly to
communicate with press &
influencers
Successful social media use on a shoestring (no dedicated staff)
Pharma laggards?
The pharmaceutical sector is a
laggard in the use of social
media (due to regulatory risk),
but this is changing thanks to
new FDA guidelines. In 2014,
IMS Health ranked the top 10
pharma companies in terms of
social media reach, relevance
& relationships. Johnson &
Johnson came out on top by a
wide margin
PROVIDER CASE Social Media Strategy at Pharma
www.jnj.com
Global consumer health company
Johnson & Johnson uses social media
for branding (e.g. 5-minute videos
about “fatherhood”), for corporate
communication (annual report), for
health communication (e.g. baby care),
and for corporate social responsibility
(e.g. a social media hub to cover UN
events on the Millennium Development
Goals)
Engaging the world using social media
STARTUP MECHANICS
3 Core Models: I. Connecting Patients
II. Connecting Patients with
Caregivers
III. Connecting Caregivers
STARTUP MECHANICS 1
Connecting Patients
for Mutual Gain
PatientsLikeMe , a pioneering social network for patients, has
doubled its number of users since 2011, reaching more than
200,000 users covering approximately 2,000 diseases
Patients networks keep on
getting bigger
The value in connecting
patients
SUPPORT - People who have gone through what
you have often are very knowledgeable about the
disease, symptoms and treatment options, and can
offer useful advice (and emotional support)
INSIGHT - As a group, if all are willing to share
detailed information about symptoms and response
to treatment, useful data can be gathered for
generating insights and for medical research
PERSONALISED SERVICE - By sharing detailed
information about yourself, providers can offer
highly targeted information and services (such as
information about clinical trials)
Matching patients and
facilitating support
Challenge #1
“Will community members really
understand my situation and be
able to offer genuine support?”
“How can I help fellow community
members?”
www.ihadcancer.com
A social network for cancer patients
I HAD CANCER lets users search community members using a
range of filters, including demographic data, location, disease
type, and whether they’re currently ‘fighting’ the disease, have
survived the disease or supported someone with the disease.
Advanced community search tool
STARTUP CASE Connecting Patients
STARTUP CASE Connecting Patients
www.esperity.com
A social network for cancer patients
Esperity invites users to keep a
structured medical diary (for
insights into how their quality of
life evolves) and analyses that
data for matchmaking purposes.
Esperity also has a built-in
translation tool so users from
different countries can easily
communicate.
Find your ‘medical twin’ using structured medical diary
STARTUP CASE Connecting Patients
www.meddik.com
Platform for collaborative health
Meddik invites users to track their
health using a Health Timeline.
The tool forces users to use a
common health language
describing conditions &
treatments. It relies on this to
calculate a clinical similarity index
to connect users. Each entry in
the timeline is an opportunity to
connect users with relevant
people and information
Matching through a ‘clinical similarity index’
Capturing data and
creating valid insight
Challenge #2
“Why should I share information?”
“Can we trust this information?”
“Is there enough data to generate
real insight?”
STARTUP CASE Connecting Patients
www.esperity.com
A social network for cancer patients
Esperity’s medical diary allows
users to track their progress in
a structured way and thereby
discover patterns and trends in
how medication is making
them feel. Esperity will also
allow users to contribute to
medical research by sharing
their data
Generating insight from a user’s own data
STARTUP CASE Connecting Patients
www.meddik.com
Platform for collaborative health
Meddik facilitates
structured discussions
and reviews of relevant
information (e.g. studies,
reports, articles)
concerning specific
conditions and treatments
Socially curated health information
STARTUP CASE Connecting Patients
www.openresearchexchange.com
An open community research platform
PatientsLikeMe is one of the
largest patient social networks
and a pioneer in community-
driven research.
It launched the Open Research
Exchange, a platform where
patients and researchers
collaborate to design, test and
share better ways to measure
health outcomes.
Bringing methodological rigour to community-driven research
STARTUP CASE Connecting Patients
www.23andme.com
23andMe acquired CureTogether
Genetic testing provider
23andMe used crowdsourced
research to determine a user’s
risk for Parkinson’s Disease
(earning it a patent).
In 2012 the company acquired
CureTogether, one of the
pioneers in community-driven
research, and thereby vastly
expanded its dataset.
Expanding the dataset to include genotype & phenotype
STARTUP CASE Connecting Patients
www.sickweather.com
Social disease surveillance
Sickweather scans socials
networks for indicators of illness,
allowing users to scan maps for
illness, akin to how one would
check for rain.
The tool lets users track illnesses,
compare symptoms and see
which viruses are making the
rounds in your area.
Mining external data sources
Challenge #3
Offering services &
making money while
protecting privacy
“How will you protect my
privacy?”
“How do you make money?”
$
STARTUP CASE Connecting Patients
www.patientslikeme.com
Social network for patients
Leader of the pack,
PatientsLikeMe, is upfront about
their business model: they sell
user contributed data to
commercial partners. However,
they are transparent about the
types of data they sell (“shared
data”) and don’t sell (“restricted
data” such as names &
addresses)
Selling data to partners
“We take the information
patients like you share about
your experience with the
disease and sell it to our
partners (i.e., companies that
are developing or selling
products to patients). These
products may include drugs,
devices, equipment,
insurance, and medical
services.” - PatientsLikeMe
$
STARTUP CASE Connecting Patients
Esperity and I Had Cancer are
keeping their options open
regarding potential commercial
partnerships but are more
hesitant about actually selling
user data. Options here are to
offer targeted
promotional/advertising
opportunities to companies or
offering ‘white label’ sections of
the site.
The challenge to protect privacy
$
STARTUP TIPS Connecting Patients
Differentiate through smart matchmaking
(recommendation engine) and make communication
safe & convenient
Offer tools that stimulate sharing (protect privacy,
match people correctly) and generate
valid/trustworthy insight (e.g. template
questionnaires, tips/education). Also try to bring in
data from other relevant sources.
No easy business models. Selling data to
commercial providers is an option but clashes with
privacy issues. $
STARTUP MECHANICS 2
Connecting Patients &
Caregivers for Mutual Gain
The value in connecting
caregivers & patients
MATCHMAKING – patients find the right
doctor, doctors attract more patients
INSIGHT - crowdsource answers to medical
questions by getting doctors & patients
talking to each other at internet scale
COLLABORATION - help caregivers,
patients and families coordinate the care
process better.
Challenge #1
Intelligent matching of
patients & providers
“How do I find a healthcare professional
who I can trust/has the right expertise/is
affordable/is accessible at my convenience?”
“How can I, as a provider, attract more
patients and build my practice/business?”
STARTUP CASE Connecting Patients & Caregivers
www.zocdoc.com
Doctor booking service
ZocDoc (and its many
competitors) offers a web-based
platform for finding and booking
a doctor online. Doctors can be
searched according to location,
speciality, review score and
availability. Doctors pay a
monthly fee and in return attract
new patients and are spared the
hassle of taking calls &
managing their agenda.
Matchmaking through an appointment booking platform
STARTUP CASE Connecting Patients & Caregivers
www.boekeenafspraak.be
Non-medical care matching engine
Boekeenafspraak.be is a Belgian
Zocdoc clone for beauty and
non-medical care services. For
example, cancer patients can
find beauticians, dieticians,
wellness coaches and
hairdressers who have
experience working with cancer
patients.
Beauty & care search & appointment booking tool
STARTUP CASE Connecting Patients & Caregivers
www.atendi.be
Find a care home
Atendi tackles the Belgian
problem of waiting lists for care
homes. Families can use Atendi
to register on multiple waiting
lists and track their position on
those waiting lists. Care
providers can manage their
waiting list via a SaaS solution
and more easily communicate
available space
Managing care home waiting lists
Challenge #2
Capturing data and
creating valid insight
“Why should I invest my time and
expertise contributing to this community?”
“Why should I trust this information?”
STARTUP CASE Connecting Patients & Caregivers
www.healthtap.com
Doctor-patient Q&A site
Pioneer in the doctor-patient
Q&A area, HealthTap lets
patients find answers to medical
questions and doctors build their
reputations. The company is
adding new services
continuously such as video Q&A,
doctor-recommended health
apps, private conversations and
HIPAA compliant storage of your
health activity.
Matchmaking & insight through a Q&A platform
STARTUP CASE Connecting Patients & Caregivers
www.crowdmed.com
Crowdsourcing solutions to diagnostic challenges
Are you a medical detective?
CrowdMed invites patients to
submit their unresolved
symptoms, and subsequently
lets anyone (doctors, non-
medical people) try to solve the
case by coming up with the right
diagnosis. CrowMed offers
premium (professional
assessment) services
Crowdsourcing Dr House
STARTUP CASE Connecting Patients & Caregivers
www.breakdengue.org
A coalition against dengue fever
Connects patients,
clinicians, NGOs & pharma
to raise awareness about
dengue fever and to
crowdsource & identify
successful prevention
methods. Uses Facebook
(160k followers) to spread
news and Twitter to activate
opinion leaders.
Crowdsourcing disease prevention methods
STARTUP CASE Connecting Patients & Caregivers
www.healthmap.org
Social disease surveillance
Healthmap aggregates
data from disease
surveillance institutes and
news sites for disease
outbreak monitoring and
real-time surveillance of
emerging public health
threats
Mining external data sources
Challenge #3
Facilitating improved and
viable collaboration
“How will this service simplify the patient-
provider relationship and create a win-win
situation for both parties?”
“Is this new way of working at all possible
given current reimbursement systems and
regulation?”
STARTUP CASE Connecting Patients & Caregivers
www.patientfusion.com
Patient portal of EHR provider PracticeFusion
Cloud-based EHR provider
PracticeFusion developed a
patient portal (Patient Fusion),
which gives patients access to
their medical record, but also
lets them find, rate & book
doctors, and communicate with
their existing doctor
‘Social’ & Collaborative Electronic Health Record
STARTUP CASE Connecting Patients & Caregivers
www.patientsknowbest.com
Personal Health Record platform
PatientsKnowBest, a UK-based
provider of a Personal Health
Record platform, lets patients
organise their “circle of care”
(clinical team and family
members) by giving them access
to their web-based personal
health record and conduct online
consultations with their doctor
‘Social’ & Collaborative Electronic Health Record
STARTUP CASE Connecting Patients & Caregivers
www.healthtap.com
Doctor-patient Q&A site
HealthTap now offers
a subscription based
online consultation
service to patients
HealthTap launches online consultations service
STARTUP CASE Connecting Patients & Caregivers
www.hetfamilienet.nl
Care collaboration tool for elderly care
Familienet is a collaboration
platform where the family and
the caregivers of an elderly
person in residential care can
easily communicate and
coordinate the care process
Facilitating communication among caregivers & family
Building a viable business model
Challenge #4
“Who pays?”
$
STARTUP CASE Connecting Patients & Caregivers
Provider pays: Doctors pay ZocDoc a monthly fee and in
return attract new patients and are spared the hassle of
taking calls & managing their agenda.
Patient pays: HealthTap charges patients a fee for its
‘concierge medicine’ service (online consultations)
Third party pays: PatientFusion charges pharmacies and
labs for convenient access to doctors. Pharmaceutical
companies pay to analyse data for prescribing patterns.
Three different business models
$
Clever matchmaking tools are a potential differentiator,
especially for patients, but often not sufficient from a
business model perspective (doctors pay for tools that
save/make money)
Providers need robust incentives if they are to share
medical expertise freely. Use 3rd party data sources
Collaboration tools must help providers save time, reduce
costs, increase revenue and/or improve customer
satisfaction – all within current reimbursement/legal
frameworks
Viable models exist to charge providers, patients and
third-party partners
$
STARTUP TIPS Connecting Patients & Providers
STARTUP MECHANICS 3
Connecting Caregivers for
Mutual Gain
The value in connecting
caregivers
CAREER NETWORKING - professionals
network LinkedIn style for career
advancement
INSIGHT - doctors help each other out
answering questions and developing
knowledge resources
COLLABORATION - easier communication
& workflow concerning medical reports,
referrals, EHR, etc
The value in connecting
caregivers
Matching care givers in a trustworthy, fast,
& relevant way
“Are these people really doctors?”
“I don’t have time for this.”
“What’s the value in networking online?”
STARTUP CASE Connecting Caregivers
www.doximity.com
Social network for doctors
Social network Doximity relies on
a database of registered doctors
to ensure legitimate
membership. The tools offers its
users a convenient way to
manage their online reputations,
network with peers for career
advancement, receive curated
literature updates and send faxes
via smartphone or the web.
LinkedIn for doctors
The value in connecting
caregivers
Generating reliable insight that
is easy to contribute to and
easy/fast to use
“I need point-of-care access to the right
information”
“I need simplicity. I don’t have time to take
on a complex tool”
STARTUP CASE Connecting Caregivers
www.sharepractice.com
Crowdsourced library of treatment insight
SharePractice is a mobile app
that lets doctors access and
contribute to a library of
treatment insights. Users can
quickly discover and rate
treatments for specific disorders.
Users can also organise their
favourite bits of information and
protocols in one place. The app
also serves as a networking tool,
organised around content.
Crowdsourcing intelligence & experience of doctors
The value in connecting
caregivers
Finding practical benefits
in connecting providers
“Will this tool save me time and
money?”
STARTUP CASE Connecting Caregivers
www.getrefferalmd.com
Referral networking for doctors and providers
ReferralMD lets users track
referral sources (and thus the
effectiveness of their marketing),
manage/build a referral network,
and makes it easier to manage
the referral process (referral
forms, keep track of referrals)
“Referrals anywhere, anytime, any device”
STARTUP CASE Connecting Caregivers
www.practicefusion.com
Cloud-based EHR
PracticeFusion wins customers
because it lets its users (doctors)
easily share information and
manage referrals. As the
company grows its user base, so
does the strength of the network
effect.
The company also offers an
analytics product, analysing
prescribing behaviour of its user
base.
An EHR with network effects
Back up your social network using formal registries of
clinicians to ensure legitimate membership and easy
searching based on structured data.
Compete on the basis of how quickly you can generate,
deliver and prioritise insight for your users
There are multiple ways in which social tools can deliver
practical benefit, such as easing communication and
earning Continuing Education credits
The best tools succeed in delivering multiple value
propositions, including networking, insight and practical
benefits, in a single tool. Most of these tools are free but
the winners have huge captive audiences that can be
commercialised to pharmaceutical companies and others.
$
STARTUP TIPS Connecting Caregivers
Obstacles & Barriers
What are the issues?
Accuracy and reliability of information. Users rely on advice and
information gained via social health tools to make medical
decisions. What measures do providers take to make sure such
information is accurate and in line with clinical practice and
science?
Shared health data may be revealed to unintended audiences
(fake accounts, data sold to 3rd parties, etc), and could be
misused for non-medical purposes (could have an impact on a
user’s reputation, career, relationships, insurance)
Privacy control. Users typically have little control or knowledge
over how their data is used & stored, or how they can (if at all)
change their privacy settings
Data security. A single hack can compromise the personal data of
thousands of users.
“Quality was variable”
A study of 10 diabetes-related social networks
highlighted serious quality & safety problems:
“Gaps in medical disclaimer user….”
“Gaps in external review approaches.”
“Transparency was missing…”
“Technological safety was poor….”
“Privacy policies’ poor readability…”
Weitzman ER, Cole E, Kaci L, Mandl KD. Social but safe?
Quality and safety of diabetes-related online social
networks. J Am Med Inform Assoc. 2011 May 1.
Who’s data is it?
Many social health platforms (try to)
commercialise user data for medical
research or even marketing
purposes.
Pioneers CureTogether and
PatientsLikeMe have succeeded in
this but simultaneously have
focused heavily on their core values
such as putting patients first and
promoting transparency.
In contrast, 23andMe (which
recently acquired CureTogether) has
faced serious PR issues in its
attempts to commercialise user
data.
“Gene Patent Stirs Controversy:
A genetic testing company fields
concerns that their latest
gene patent goes
against their ‘core
beliefs’ regarding
access to genetic
information”
June 4, 2012 headline in The
Scientist
A word of advice
Some recommendations on privacy Based on Jingquan Li. Privacy Policies for Health Social Networking Sites.
Journal of the American Medical Informatics Association. 2013; 20(4):704-704.
• Patients should share the minimum amount of personal data to
accomplish the intended purpose. The more data they share, the
bigger the risk.
• Get patients engaged in protecting their privacy, for example by
offering multiple levels of privacy, and keep default setting at
maximum level of privacy. Also educate users about privacy risks. And
be fully transparent about the uses of their data.
• Build privacy and security in the design of the site. E.g. encrypt data,
automatically remove personal identifiers, secure data storage, etc.
• Be accountable. New legislation is needed to hold providers
accountable for violating privacy and abusing data. Providers must
give users control over how their health data is used, especially for
non-medical purposes.
A final word of advice
• Consumers & patients: There are some exceptionally useful social
tools out there, especially for social support, for finding information
about your health concerns and for keeping motivated in your lifestyle
choices. But take care, you and your personal data are often the
‘product’.
• Providers (hospitals, caregivers, public health entities, etc): It's
unstoppable. It's the right thing to do for your patients, and it makes
business sense too. Think strategically about the opportunities.
• Startups: There should be plenty of room to innovate in the core
mechanics of what all the current social health tools do, i.e. connect
people for mutual gain and facilitate collaboration for mutual gain.
Also, take issues of trust, privacy and security very seriously. These will
only gain in importance.
Thanks!
Author: Frank Boermeester
About Microsoft Innovation Center Vlaanderen
Our mission is to stimulate ICT-related innovation and
entrepreneurship in Flanders, with a particular focus on healthcare.
We do so by supporting high-potential technology startups. MIC
Vlaanderen has two operational offices in the cities of Genk and
Kortrijk, Belgium.
www.micvlaanderen.be